Advanced Serous Primary Peritoneal Cancer - Grade 3C

Hi Jebbiblitzen and a very warm welcome to the online community which I hope you'll find is both an informative and supportive place to be.

I'm not a member of this group but I noticed that your post hadn't had any replies yet. Responding to you will 'bump' it back to the top of the discussion list again.

I have searched the group for previous threads which mention 'parp inhibitors' and found these posts for you to have a look through. You can always reply to any of the posters if you think they can help further.

While you're waiting for replies, it would be great if you could put something about your diagnosis and treatment so far into your profile as it really helps others when replying to you and also when looking for someone on a similar pathway. It also means that you don't have to keep repeating yourself. To do this click on your username and then select 'Profile'. You can amend it at any time and if you're not sure what to write you can take a look at mine by clicking on my username.

Hi Jebbiblitzen, I was diagnosed with the same cancer in February 2023. Due to waiting list for chemo I didn’t start my treatment until June despite being on the escalation list. I had surgery at the end of August followed by three more chemo sessions. My last chemo was on 17 November (postponements because of bloods pushed the date on) and I had my CT scan on 5th January, my 75th birthday - do they make a habit of giving these birthday presents! I went for my results yesterday but they hadn’t had the report from the scan, due to the doctors’ strikes, I was told. Also the result of the BRCA2, sent off in June, still hasn’t been received. The doctor said I would receive an appointment for two weeks time when both results will be there. I don’t know how he can be so positive about the BRCA2 result but we will see. It is important because if I need to have the medication it has to be started within 3 months of the last  chemo - that is getting very close to the deadline. Will be interesting to hear what others have experienced with parbs. Hope all went well on your final chemo.

Hi there sorry l have only just seen your message. I want to reassure you. I had the exact same diagnosis as you in October 2020 and they are becoming more successful at treating it. Not curing but treating and allowing you a good quality of life. 
My story has been a bit complicated. I didn’t have a debulking op until December 2022. I also had hysterectomy, removal of omentum, bowel surgery (l now have a stoma) and removal of cancer on my liver.
For just over a year l have been on Niraparib which l believe is a parp of inhibitor. lt is oral. I take half the recommended dose (l became ill with low platelets on the full dose) lt works best on patients who have the faulty BRACA gene - l don’t but it still seems to be working for me. You have monthly blood tests. I did have one tumour pop up at the top of my vagina in October but they zapped it with radiotherapy. Niraparib doesn’t work for everyone but l would certainly recommend you give it a try if your oncologist suggests it. 
I hope this helps. I wish you lots of luck.

I am sorry to hear of your diagnosis. Please see my reply below. You don’t need to know the results of the BRACA tests. You can take Niraparib whether you have the faulty BRACA gene or not. If it has to be within 3 months of chemo l would advise chasing them up. I wish you lots of luck

Hello and thank you so much for your reply.  Sounds like we’ve had the same treatment and similar birthday gifts!

I do hope your results are back and a decision has been made regarding your future treatment.  I had to chase my results up three times and they had to be re-requested.  My result came back and it is the result where you have a choice whether to take the parp inhibitors or not.

Had my last chemo on Monday although had to have blood tests repeated on the day due to bloods not being right the previous Friday but thankfully it did go ahead.

Scan booked for 15th February and consultant on 23rd when hopefully I’ll find out more about the parp inhibitors.

please let me know how you get on.

all the best. X

Hello and thank you so much for your reply and reassurance and it’s so good to hear you are getting some quality of life after all you have been and are going through.

Im Hoping before long there might be some kind of normality in my life again.

i, like you don’t have the BRCA gene so have a choice whether to take the parp inhibitors or not.  The Consultant is erring on the side of me taking them as I’ve responded well to chemotherapy.  Hopefully I will get more information when we meet on 23rd.  

best of luck to you to you

all the best. X

MacMillan nurse has been chasing up for several months. I don’t know where to go to chase up myself as testing not at the same health authority as my treatment.

Thank you for your reassurance and I will definitely consider this treatment if offered.

Hi, I haven't been on here for a while. I was diagnosed with stage 3 peritoneal cancer in October 21. I have had 3 rounds of chemo, followed by debulking op then 3 more rounds of chemo  then onto avastin. Unfortunately my body didn't tolerate it so the cancers started growing again. i had 4 more rounds of chemo which controlled it well but couln't take the last 2 rounds. i was then put on Niraparib but had to stop thst because of side effects so i was then put on a lower dose. my cancers are still growing so was told it wasn't working so i am now living with no treatment. sorry it's so long. i'm glad it is working for you and you continue to thrive.

Oh Elizabeth - l am so sorry you have been so unlucky with your treatment. Would you be able to tolerate chemo again? I had Carboplatin on its own for a while. Would further surgery be possible? Are there any trials that would be suitable for you? Can you ask for a second opinion? Sending you hugs x